Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Hello, I am brand new to the group and haven't got my feet under me as far as navagating the web page just yet. Anyway, I wondered if anyone on here is a parent/sibling of a child with PSC. I am 23 years old and my brother has been diagnosed with PSC/Chron's recently. He is 11 years old. The doctors have not been able to tell us much as PSC is rare in children. I was wondering if anyone who knows a child with PSC could share their experience or point me in the direction of more information. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 - You have found a wonderful resource group. You will hear from individuals with PSC and Crohn's and Ulcerative Colitis, from parents, from spouses and siblings and caring friends. You can ask questions and receive knowledgeable responses, plus you will immediately see the caring support given to all members of the group. Keep reading the posts and you will learn so much. As a mom to a 17 year old with PSC, Ulcerative Colitis and Juvenile Rheumatoid Arthritis, this group has been and continues to be a great support! Take care. Joanne H (, Ca., mom of , 17, UC/PSC 2-06; JRA 1998) -----Original Message-----From: [mailto: ]On Behalf Of Sent: Tuesday, February 05, 2008 6:11 PMTo: Subject: Pediatric PSC Hello, I am brand new to the group and haven't got my feet under me as far as navagating the web page just yet. Anyway, I wondered if anyone on here is a parent/sibling of a child with PSC. I am 23 years old and my brother has been diagnosed with PSC/Chron's recently. He is 11 years old. The doctors have not been able to tell us much as PSC is rare in children. I was wondering if anyone who knows a child with PSC could share their experience or point me in the direction of more information.Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Hi , Welcome. I, myself, am fairly new to the site. My son, 6yo., was diagnosed w/ Crohn's and PSC 2 years ago. The Crohn's and Colitis Foundation (CCFA) has great pediatric info available and answered lots of questions I had regarding the Crohn's, so that's a great place to start. I've spent lots of time surfing and lurking on boards like these to find more answers to my PSC questions. My son has a GREAT GI doc at the Cleveland Clinic so she has been great to answer any questions I've had too. At our initial diagnosing blood work, she said a " less than 1 percent chance of IBD " , (HA!) and from what I've read, close to 70% of people w/ PSC have some sort of IBD. (all these letters: CD, IBD, PSC......get a little crazy, LOL!) As far as the PSC, it's been, do the initial testing (MRCP) and then " just keep an eye on him " . Routine blood work, ultrasounds, no addition meds other than what he's on for CD. The only other thing I can think of was keeping an eye on " the itch that rashes " as opposed to the " rash that itches " . Doc described it to me as a " warning sign " for us. Others here have personal experience and might better be able to explain this. One of the main things to keep in mind is not to freak yourself out, which can definitely happen searching the internet. Goodluck, > > Hello, > > I am brand new to the group and haven't got my feet under me as far as navagating the web > page just yet. Anyway, I wondered if anyone on here is a parent/sibling of a child with PSC. > > I am 23 years old and my brother has been diagnosed with PSC/Chron's recently. He is 11 > years old. The doctors have not been able to tell us much as PSC is rare in children. I was > wondering if anyone who knows a child with PSC could share their experience or point me in > the direction of more information. > > Thank you, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 For other parents... The Crohn's and Colitis website has a great handout made for teachers. I have emailed it to teacher's, the school nurse, and for use in the education 504 plan (which can individualize instruction for kids with medical problems). Joanne H (, Ca., mom of 17, UC/PSC 2-06) Hi ,Welcome. I, myself, am fairly new to the site. My son, 6yo., was diagnosed w/ Crohn's and PSC 2 years ago. The Crohn's and Colitis Foundation (CCFA) has great pediatric info available and answered lots of questions I had regarding the Crohn's, so that's a great place to start. > I am 23 years old and my brother has been diagnosed with PSC/Chron's recently. He is 11 > years old. The doctors have not been able to tell us much as PSC is rare in children. I was > wondering if anyone who knows a child with PSC could share their experience or point me in > the direction of more information.> > Thank you,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Dear and ,The important thing in this journey is to stay informed.This group will be a great asset to you.Please also check out PSC Partners Seeking a Cure at www.pscpartners.org.We are about to have our 4th conference with the experts on PSC speakingto patients and caregivers of those with PSC.There are a lot of parents who come.The conference is the first weekend of May in ville FL.It can really help you.LeeOne of the main things to keep in mind is not to freak yourself out, which can definitely happen searching the internet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Thanks everyone for the support. My brother has been my baby for as long as I can remember, and it is immensely hard to stand by the sidelines and not be able to do anything. I have helped to raise him and teach him and watch him grow. Fortunately we live in Indianapolis near a wonderful children's hospital (Incidentally s had heart surgery there when he was 18 months old, though this is unrelated). For now he is doing okay, though his Chron's is very bad. They initially wanted to treat him with a new, agressive form of IV drug, however they are now unable to do so because of the PSC. It is one of those wait and see type things. He has good days and bad days but we are fortunate so far in that he has not had any major interruptions in his life. I wish there was a website out there for kids with PSC, but I haven't found one yet. Maybe I'll make one as I learn more along the journey! > > > > Hello, > > > > I am brand new to the group and haven't got my feet under me as far > as navagating the web > > page just yet. Anyway, I wondered if anyone on here is a > parent/sibling of a child with PSC. > > > > I am 23 years old and my brother has been diagnosed with > PSC/Chron's recently. He is 11 > > years old. The doctors have not been able to tell us much as PSC is > rare in children. I was > > wondering if anyone who knows a child with PSC could share their > experience or point me in > > the direction of more information. > > > > Thank you, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 I wish there was a website out there for kids with PSC>>> I think a forum for parents/caregivers of children with psc was started from this group. I'm sure someone who is part of the group will chime in and give you more info. I empathize with your brother. I developed UC when I was 11. It certainly changed the look of my teenage years. Your brother is very fortunate to have a sister as caring as you are. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 The website for PSC Moms, Dads and Caregivers (Yahoo Groups: Health) is: http://health.groups.yahoo.com/group/pscmoms/ Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of Barby Sent: Wednesday, February 06, 2008 17:13 To: Subject: Re: Re: Pediatric PSC I wish there was a website out there for kids with PSC>>> I think a forum for parents/caregivers of children with psc was started from this group. I'm sure someone who is part of the group will chime in and give you more info. I empathize with your brother. I developed UC when I was 11. It certainly changed the look of my teenage years. Your brother is very fortunate to have a sister as caring as you are. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07 married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 " I wish there was a website out there for kids with PSC, but I haven't found one yet. Maybe I'll make one as I learn more along the journey! " There is a yahoo group for kids w/ PSC and the woman who founded that group- Pam is a wonderful mom and amazing resource. There is also a very active site for all different types of pediatric liver disease that you may find helpful www.liverfamilies.org There are several moms there with kids w/PSC- myself included. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Where do you live. Dr Jonas at Boston Children's is very familiar with PSC. was diagnosed at 11 at at 19 had his tx. He is now 22 and away at college looking and feeling great. A few tips I can give you are to keep a notebook so if you have questions you write them down so when you get to the Dr you don't forget to ask. I wrote down the answers so I could digest it when I got home. I also had a section for insurance as they can be a pain in the butt. As they changed his meds I kept a current list in there so when we went to different Drs I did not forget doses. One thing I did wrong over the years is that because always wanted me to be honest with him we seemed to focus on the possibility of getting very sick or dying. After he tx and he was physically much better we had a problem because he had never dreamed about what his positive potential future could be, ie going to college,to be a teacher. The first year he was out he screwed up and flunked every class he took in college. One day he said to me that he had never planned for a future he did not think he would have. That really shocked me. Also because he spent so much time in the hospital he did not develop the ability to have lasting relationships. I think he thought he would die so why try to have a long term girlfriend. For those that have teenagers that are going through this please balance what you talk about even if your child is very sick. Marti wrote: Hello, I am brand new to the group and haven't got my feet under me as far as navagating the web page just yet. Anyway, I wondered if anyone on here is a parent/sibling of a child with PSC. I am 23 years old and my brother has been diagnosed with PSC/Chron's recently. He is 11 years old. The doctors have not been able to tell us much as PSC is rare in children. I was wondering if anyone who knows a child with PSC could share their experience or point me in the direction of more information.Thank you, Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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